Saturday, April 26, 2008

Today was walk day for "Evan's CHARGErs" 3rd March for Babies. It was a beautiful, sunny, warm day in Yakima--perfect for a walk. This year, Jeremy, Evan, and I didn't make it all the way to the turn-around point for a 5.5 mile walk...but that was OK. Evan walked some (holding onto a hand or two of ours), and rode in his stroller.

This year we were joined by Grandma and Grandpa Key; Auntie Jen; friends Angela, Connor, and Casey; friends Corey and LaRaine; Evan's special friend Burke (who also happens to have CHARGE Syndrome), his mommy Chris, and Grandparents Rosie and Gary; and friends Marisol, Sylvia, and their families.

Huge "Thank You"s to each and every team member who helped to raise money and/or donated; thank you also to all our extremely generous friends and family who supported us by sponsoring our team. As of right now, we have around $5000.00--but we still have donations coming in and Super-1-Foods in Ellensburg is going to have change boxes at their check stands for 2 weeks in May. So the grand total will be higher--I'll keep everyone posted. I don't know that we will make our goal of $8939 (a mile of dimes), but it's still a lot of money!

Here are some of the best pictures from today:

Our friend in CHARGE, Burke. He was a speed-demon today in that walker.

Lunch time, with Burke looking on.

Each year we take a picture with "Red" Robin. This time Evan was not so cooperative.

Monday, April 21, 2008

There are 5 days left until March for Babies. While we can accept donations to our team at any time, receiving them before Walk day means they "count" toward our team and individual walker totals for awards.

So if you have been thinking about sponsoring our team, but haven't got around to it...this is a reminder. Your support can mean the world to a preterm infant!

Online sponsorship is secure and simple--just click on the large button with Evan's picture in the right side-bar and follow the prompts.

On the front page of its Personal Journal section, the Wall Street Journal (4/17, D1, Winstein) reports that a study published in this week's New England Journal of Medicine, and a website created by the National Institutes of Health, "aim to help parents of extremely premature babies calculate their newborn's chances of survival." During the study, conducted by researchers at the University of Texas Medical School, "4,450 babies born after 22 to 25 weeks' gestation" were tracked. The investigators found that, beyond gestation period, "other factors were at least as important to the baby's survival. Girls survived much more often than boys -- so much, that being a girl was equivalent to an extra week in the womb." Moreover, "Increased birth weight also improved the chances of survival."

According to the New York Times (4/17, A23, Grady), being "singletons rather than twins or multiples, [and whether] their mothers had been given steroids before birth to help the fetal lungs to mature," also contributed to the babies' survival. According to the researchers, "[a]ny of those factors was about as good as being a week older, which makes an enormous difference in development from 22 to 25 weeks' pregnancy." The Times notes that "[o]utcomes are nearly impossible to predict at birth" for premature babies. "Although some extremely premature infants do well, many die, sometimes after weeks or months of painful invasive procedures in the intensive care unit." Those that survive "often suffer brain damage, behavior problems, vision and hearing loss, and other disabilities." Because of these factors, "[d]octors and parents struggle to decide when aggressive treatment seems reasonable."

Researchers and the National Institutes of Health now hope the study can "provide the parents and doctors of very premature newborns with a better way to assess children's chances of survival or disability," USA Today (4/17, 8D, Szabo) reports. By considering the four factors identified by the study in addition to gestational age, doctors can now "predict survival with a three percent margin of error." In contrast, "[g]estational age has a 12 percent margin of error." For example, the "study notes that a girl born at 24 to 25 weeks at 1.7 pounds who was treated with steroids has a 33 percent chance of dying or being profoundly impaired," while the "risk rises to 87 percent for a twin boy of the same age who weighs 1.2 pounds and who didn't get steroids."

Reuters (4/17, Emery) notes that the National Institute of Child Health and Human Development, which "funded the study," includes a calculator on its website. The calculator is "designed to guide doctors and families" make better-informed decisions "about possible infant outcomes based on standardized assessments."

The AP (4/17, Stobbe) reports that, after seeing the results, "[s]ome doctors said they were startled to see that certain factors equated to an extra week in the womb." In the results, researchers also suggest "that in cases where boys and girls had equal chances of survival, girls were less likely than boys to receive intensive care." While "[i]t's not clear why," it may be because "heavier babies tend to get intensive care more often, and boys tend to be heavier." Medscape (4/16, Barclay) and WebMD (4/16, Hitti) also reported the story.

Sunday, April 20, 2008

Yesterday brought a brief flurry of snow to Ellensburg (up to a foot was predicted in the mountains this weekend). We woke up to a blanket of fresh snow deep enough to cover the grass. I see some blue sky peeking through the clouds, so who knows how long this snow will last.

Grandma Anna is up visiting us for the week. She waited until mid-April to come up from California--ironically enough--to avoid the snow. Guess we showed her!

Our house...looking more like January than April! This is the latest I've ever remembered fresh snow.

I took a picture up at Mt. Rainier a couple of Octobers ago, with autumn leaves and snow--the intersection of fall and winter. Well, this is the intersection of winter and spring--baby leaves, a viola, and snow!

Wednesday, April 16, 2008

(**Note: I did not write this--it was an internet "forward" that a friend sent to me the other day. Normally, I just delete emails like this, but I found this one touching. Even though the person writing this is talking about an experience with "typical" kids, it has a lot of application to raising kids with special needs. I do not know who the author is.)

We are sitting at lunch one day when my daughter casually mentions that she and her husband are thinking of "starting a family."

"We're taking a survey," she says half-joking. "Do you think I should have a baby?"

"It will change your life," I say, carefully keeping my tone neutral.

"I know," she says, "no more sleeping in on weekends, no more spontaneous vacations."

But that is not what I meant at all. I look at my daughter, trying to decide what to tell her. I want her to know what she will never learn in childbirth classes. I want to tell her that the physical wounds of child bearing will heal, but becoming a mother will leave her with an emotional wound so raw that she will forever be vulnerable.

I consider warning her that she will never again read a newspaper without asking , "What if that had been MY child?" That every plane crash, every house fire will haunt her. That when she sees pictures of starving children, she will wonder if anything could be worse than watching your child die.

I look at her carefully manicured nails and stylish suit and think that no matter how sophisticated she is, becoming a mother will reduce her to the primitive level of a bear protecting her cub. That an urgent call of "Mom!" will cause her to drop a soufflé or her best crystal without a moments hesitation.

I feel that I should warn her that no matter how many years she has invested in her career, she will be professionally derailed by motherhood. She might arrange for childcare, but one day she will be going into an important business meeting and she will think of her baby's sweet smell. She will have to use every ounce of discipline to keep from running home, just to make sure her baby is all right.

I want my daughter to know that every day decisions will no longer be routine. That a five year old boy's desire to go to the men's room rather than the women's at McDonald's will become a major dilemma. That right there, in the midst of clattering trays and screaming children, issues of independence and gender identity will be weighed against the prospect that a child molester may be lurking in that restroom. However decisive she may be at the office, she will second-guess herself constantly as a mother.

Looking at my attractive daughter, I want to assure her that eventually she will shed the pounds of pregnancy, but she will never feel the same about herself. That her life, now so important, will be of less value to her once she has a child. That she would give herself up in a moment to save her offspring, but will also begin to hope for more years, not to accomplish her own dreams, but to watch her child accomplish theirs. I want her to know that a cesarean scar or shiny stretch marks will become badges of honor.

My daughter's relationship with her husband will change, but not in the way she thinks. I wish she could understand how much more you can love a man who is careful to powder the baby or who never hesitates to play with his child. I think she should know that she will fall in love with him again for reasons she would now find very unromantic.

I wish my daughter could sense the bond she will feel with women throughout history who have tried to stop war, prejudice and drunk driving. I want to describe to my daughter the exhilaration of seeing your child learn to ride a bike. I want to capture for her the belly laugh of a baby who is touching the soft fur of a dog or cat for the first time. I want her to taste the joy that is so real it actually hurts.

My daughter's quizzical look makes me realize that tears have formed in my eyes. "You'll never regret it," I finally say. Then I reached across the table, squeezed my daughter's hand and offered a silent prayer for her, and for me, and for all the mere mortal women who stumble their way into this most wonderful of callings.

Please share this with a Mom that you know or all of your girlfriends who may someday be Moms. May you always have in your arms the one who is in your heart.

Sunday, April 13, 2008

As parents of kiddos with special health needs, we are used to juggling a multitude of specialist appointments. I would venture to say that all of our kids have had at least one eye exam (if we don't count an eye-care provider of some kind as a member of our child's health care "team").

Parents of typical kids may not be so "lucky" in this respect--the percentage of children who have recieved a complete eye exam (as opposed to vision screening at the pediatrician's office) by the time they are 5 years old is only 14%. When you consider that undetected vision problems are the number one childhood handicap, preventative eye care just makes sense.

I received an email recently from my professional organization (American Optometric Association, AOA) that was talking about what an important communication tool blogging has become, especially among mothers (really??? where have you guys been lately!). Word-of-mouth via blogging has been a huge in getting the word out about a special program sponsored by AOA called InfantSEE.

InfantSEE providers will provide one no-cost assessment to any child under 12 months of age. It's called an "assessment" but essentially it is a full exam where vision, eye alignment, and ocular health are all examined. The baby does get dilating drops, so it takes about an hour for the appointment.

Please share with any mom friends who have babies under a year old. The InfantSEE web page at www.infantsee.org has more information. There is also a tool at the very top of the page to find an InfantSEE provider in your area.

Thursday, April 10, 2008

We spent last weekend in Bellingham, with our friend's Amy and Mighty Max. We met at Children's Hospital. Max and Evan have been buddies since they were tiny babies--it's been fun getting them together as they've grown. I wouldn't say they exactly play together, but that will come in time. Here are some of my favorite pictures from the weekend.

Tuesday, April 8, 2008

We bought some "Spiffies" tooth wipes at the suggestion of Amy, Max's mom. I used one for the first time on Evan before going to bed. He was a little bit fussy, and not terribly amused with me "wiping" his teeth off (in spite of the grape flavor!). Being a little bit gun-shy of the last time I cleaned his teeth with a finger-mounted device, I stuck to just wiping the outer edges of his teeth. Evan was very good and did not try to clamp down on my finger at all.

So this morning daddy used a wipe. He went for the occlusal and inside surfaces...and Evan bit him!

Hopefully, Evan will get more used to us being in his mouth and will relax a little bit. I will cut him some slack for the bite, because he is coming down with a cold.

Wednesday, April 2, 2008

This is Evan's very first purposeful "drawing" ever! I want to see if he will grab the stylus and draw some more, but I'm torn because I don't want to erase his first efforts (thankfully, he went for the magnadoodle vs. the aquadoodle). I took this picture to commemorate the occasion.

Addendum. Evidently dad was not so torn--he just informed me he erased the drawing!

What is CHARGE???

CHARGE syndrome is a recognizable (genetic) pattern of birth defects which occurs in about one in every 9-10,000 births worldwide. It is an extremely complex syndrome, involving extensive medical and physical difficulties that differ from child to child. The vast majority of the time, there is no history of CHARGE syndrome or any other similar conditions in the family. Babies with CHARGE syndrome are often born with life-threatening birth defects, including complex heart defects and breathing problems. They spend many months in the hospital and undergo many surgeries and other treatments. Swallowing and breathing problems make life difficult even when they come home. Most have hearing loss, vision loss, and balance problems which delay their development and communication. All are likely to require medical and educational intervention for many years. Despite these seemingly insurmountable obstacles, children with CHARGE syndrome often far surpass their medical, physical, educational, and social expectations.